By Audrey Fleming

“Without the organ donor, there is no story, no hope, no transplant. But when there is an organ donor, life springs from death, sorrow turns to hope, and a terrible loss becomes a gift.” –United Network for Organ Sharing (UNOS)

Butterfly Garden at the National Donor Memorial, symbolizing renewal of life through transplantation. Photo credit: UNOS.

In 2019, there were 36,527 organ transplants performed in the United States. The first step in the organ donation process is identifying the patient’s condition and the fact that they need a transplant. There are a great number of reasons one may need an organ or tissue transplant. A heart transplant may be necessary for conditions such as congenital defects, heart failure, or coronary artery disease. A person with alcohol-related liver disease, acute liver failure, or nonalcoholic fatty liver disease could be in the running for a liver transplant. A kidney transplant may be the solution to extreme cases of diabetes, high blood pressure, or polycystic kidney disease.

Every patient has their own, personal reaction to hearing for the first time that he or she needs a transplant. Tamsin Skeels, a wife and mother of two in Charlotte, North Carolina, received the news that she was in need of a liver transplant in November 2019. Skeels says that when she got the diagnosis, she was, “Terrified. I was immediately overwhelmed by worry that I might not survive.” 

Longtime Collegiate teacher and coach Weldon Bradshaw was diagnosed with an autoimmune liver disease in early 2010. He found out that he would be facing a transplant in October 2012. A competitor at heart, his initial thoughts were, “Bring it on. Give me your best shot, I’m ready for anything.” He told the nurses and doctors from the beginning that, “I was going to be a good patient and do what they told me.” 

Once the patient is diagnosed with a condition that leaves him in need of a transplant, he begins the process of getting on the organ transplant waiting list. 110,000 people are waiting for a lifesaving transplant, and another person is added to the waiting list every 10 minutes. 

UNOS is a nonprofit organization based in Richmond that manages the United States organ transplant system. They manage the waiting list, matching donors to recipients. They also maintain the database that contains all of the data for every transplant event that occurs in the United States. UNOS works in conjunction with Donate Life America, a nonprofit organization focused on increasing the number of donated organs, eyes, and tissues to save and enhance the lives of as many people as possible. 

The first step of getting on the waiting list is getting a referral from the physician in order to be evaluated by a transplant program. Once the patient is referred, he must select a transplant center. In selecting a center, there are multiple factors to consider, including its location, support group availability, compatibility with the patient’s insurance program, and financial agreements. 

Another important factor in determining eligibility for a transplant is the current state of health of the possible recipient. An example of something that would prohibit a patient from receiving an available organ would be currently having an infection, as this would put the patient at a higher risk of rejecting the organ.

The final step is to contact the transplant center of choice to schedule the evaluation appointment, to see if the patient is eligible to be a transplant candidate. In order to be eligible for the waiting list, the patient must prove that they are a candidate healthy enough to have a high chance of a successful transplant. This may include changes in lifestyle, such as stopping smoking or drinking, or losing weight. After the patient is considered eligible, they are put onto the list and begin the waiting process. 

David Fleming, President and CEO of Donate Life America. Photo credit: Alexa Welch Edlund.

My father David Fleming, President and CEO of Donate Life America, explained that, “Waiting time can vary greatly, depending on the organ in need and geographic location of the patient’s transplant center.” For example, average waiting times tend to be greater in urban areas due to concentration of transplant centers and a higher number of waiting patients. Generally, waiting time averages from three to five years. Some patients wait for a significantly shorter time due to the severity of their illness. 

Bradshaw was only on the waiting list for roughly two weeks. On November 8, 2012, Bradshaw’s doctor came into his hospital room to tell him that if they couldn’t get him a liver in a week, he wouldn’t survive. Bradshaw had been tested and was considered healthy enough to be eligible for a transplant, but his condition was critical. In this case, finding a match for Bradshaw was urgent. 

Bradshaw maintained his fighter mindset during this time. He says, “I thought if I said, ‘I’m gonna’ die in a week,’ that would have been very hard, so I just broke it down into little increments. I thought, ‘I’ll just hang on until the next commercial that comes on TV,’ or ‘I’ll try to fall asleep, and when I wake up, a little more time will have passed.’” On the sixth day, which Bradshaw thought was the seventh day, and after his doctor said he had a week to live, the phone rang.

Skeels with her transplant doctors, Dr. Aparna Rege (left) and Dr. Bradley Collins (right). Photo credit: Tommy Skeels.

Skeels was on the waiting list for a new liver for a little over four months. During this time, she experienced three “dry runs.” Dry runs are when the organ that the patient needs becomes available, and the patient gets called in and prepared for surgery, but the organ does not end up being a match for the patient.

On September 6, 2019, Skeels received her liver. Her wait time was relatively short because her doctors agreed to accept an organ from what is referred to as an expanded criteria donor. In Skeels’s case, the liver came from an individual who died from cardiac arrest rather than brain death. Fleming says, “Organs from these donors typically require more intense immunosuppression for the recipient. In Skeels’s case, she was a relatively young patient, and her doctors believed she could withstand the heavy immunosuppression.” 

If an organ becomes available for which the patient is the best match, they are healthy enough at the time, and the donor’s hospital is close enough to theirs, then they can receive the transplant. Sadly, 22 people die every day because the organ they needed isn’t available.

In 2015, Brian Glennon, a New Jersey resident and father of four, started to volunteer for organizations in the organ donation field. His wife Elisse Glennon, the head of Public Education and Communications at New Jersey Sharing Network, recommended he attend a symposium on living donation. After learning about the process and sitting on the information, he says he “woke up one day and thought, ‘I do want to donate one of my kidneys to somebody.’” 

Glennon the day after his donation. Photo credit: Elise Glennon.

In contrast to donations from diseased patients, living donors can donate either an organ that they don’t need or parts of other specific organs. A whole kidney, a portion of the liver, or a portion of the pancreas can be donated by a living donor. Humans only need one kidney to survive, and the liver regenerates. The pancreas does not regenerate in the same way the liver does, but humans can survive with just a segment of a pancreas.

Glennon is what is called an altruistic donor, who donates to an unnamed patient. Glennon was able to take part in what is called a kidney paired donation, often referred to as a chain donation. Fleming explained chain donation as, “A donation chain is when there are two pairs of potential recipients and donors who are not a match to their intended recipient, but they match the other patient waiting. There is a ‘kidney swap,’ so both patients receive a transplant.” 

Living donation gives more opportunity for patients awaiting organs to receive one in time. This saves lives by allowing patients to receive their needed organ quicker than waiting for an organ from a deceased donor.

However, there are risks to consider when becoming a living donor. Some complications that could result from donating an organ include an infection at the incision site, hemorrhaging, the potential need for blood transfusions, and incisional hernias. 

When contemplating becoming a living donor, Glennon considered another common concern: his children. He said, “I had asked about my children if they ever needed a kidney, and they reassured me that with my medical history and no kidney disease in my family that that was a very low possibility. I also have four children and hope if one of them ever needs a kidney, another one will help them out.” Although there were risks associated with his decision, Glennon has no regrets. He says, “No regrets. I only wish I could donate my other one. My life is better since my donation. I feel like my life was enhanced by it.”

Part of why it takes so long to receive an organ transplant is because although more than 165 million people have registered as organ donors, only about three in 1,000 can actually become donors when they die. In order for a patient to receive an organ, the donor typically must have passed away while on a ventilator in a hospital. This is because there must be continuous blood flow to the organs up until time of recovery. As in Skeels’s case, there are some exceptions, where medical professionals use a rapid recovery protocol to recover organs from patients who do not die on a ventilator. 

In order to match with a donor, the patient and donor must have compatible blood types, relatively similar body size, and the distance between the donor’s hospital and the patient’s hospital has to be close enough to quickly transport the organs. Historically, whether or not the patient receives an available organ also depends on how long they have been waiting. According to Fleming, “Current organ allocation policies in the United States focus more on the severity of illness and likelihood of long-term survival as opposed to waiting time. Waiting time is primarily used as a ‘tie-breaker’ if all other factors are equal.” 

If the patient successfully gets through the process of getting on the waiting list, waiting for a match to become available, and receiving their transplant, there is still a long road of recovery ahead.

One challenge presented during recovery is what transplant professionals call “survivor’s guilt.” Skeels says this was the most challenging part of her recovery. “For me, the guilt was a lot harder/worse than the physical pain. I literally couldn’t stop crying about it afterwards. Intellectually, I know that my donor didn’t go to heaven because of me or for me, but emotionally, it was a real challenge for me to feel ok about the fact that he didn’t get to be here anymore, but that I do.” Skeels met with the transplant psychiatrist and members of the psychology team and members of the clergy. “Eventually, I came to think of it like this… He didn’t die so that I could live; I got to live because he died. It’s a small distinction, I know, but I feel like it’s a significant one, and it helps me.”

During recovery, every patient is at risk for rejection. Rejection of an organ occurs when the body thinks the transplanted organ or tissue is a foreign invader and attempts to destroy it. The body does this as a defense mechanism against things like infectious germs and sometimes fails to welcome the new organ. 

Rejection comes in two forms: acute and chronic. Acute rejection is when the body quickly labels the organ as a foreign invader and shuts it down immediately. Chronic rejection happens slowly as the body destroys the new organ and causes organ failure.

Photo credit: Pigsels.com.

In order to combat rejection, there are anti-rejection medications, such as immunosuppressants, that prevent the body from attempting to destroy the new organ. Certain additional challenges are presented by this. While an immunosuppressant reduces the likelihood of the body to reject the organ, it also reduces the body’s ability to fight off the infectious germs the defense mechanism was supposed to combat in the first place. This puts patients at risk for infections in the body that may be extremely dangerous when the immune system is down. 

Along with anti-rejection medicine, there are various other medications patients may rely on after a transplant. Skeels says, “Currently, I take 23 pills per day. In the beginning, I took over 40 per day, so this is awesome! Some are varieties of anti-rejection medications, some are pain management, some are vitamins and minerals that anti-rejection pills deplete, and some are basic, like aspirin, anti-reflux, and sleep pills.”

Because of this added risk, organ recipients are highly encouraged to choose a balanced, healthy lifestyle. This includes a balanced diet with lots of fruits and vegetables, drinking plenty of water, high fiber foods, protein, and exercising. 

Skeels can’t eat food that interferes with immunosuppressants, such as grapefruits and pomegranates. She also can’t have food-borne bacteria-harboring foods, like sushi or deli meats. She avoids salts and sugar when possible and drinks lots of water to help combat one of the immunosuppressants that is hard on kidneys. Additionally, her medication has caused her to develop cataracts in her eyes, and she currently has a surgery scheduled to remove them.

Bradshaw and his transplant surgeon, Dr. Robert A. Fisher. Photo credit: Weldon Bradshaw.

During his recovery, Bradshaw lost significant weight due to medications which affected his appetite. Because it was during the cold months, and he had lost weight, Bradshaw says, “I was cold from the inside out and the outside in.” In an attempt to get him to gain some weight back, his doctor recommended that he get a McDonald’s milkshake every day. Bradshaw says, “I was thinking, ‘This guy just told me I have to get a milkshake every day, I think I can handle that.’” Bradshaw says the recovery was more challenging than he expected it to be because of how long it took. He says, “Patience is not one of my greatest virtues, but I did learn patience through this process.”

Becoming an organ donor can leave a profound impact on the lives of those in need. Skeels wrote a letter to her donor family on the one-year anniversary of her transplant surgery. She said, “Essentially, I told them how sorry I am for their loss, how grateful I am, how humbled I am, how grateful my friends and family are, and how I am going to spend every minute of every day of the rest of my life taking good care of myself so that part of their loved one continues to be cared for.”

When reflecting on what he might say to his donor if he had the chance, Bradshaw says, “‘Thank you’ seems too hollow. I hope that everything I’m doing is a justification or validation of the decision she made, and I hope I can live a virtuous life like she did.”

Skeels, Bradshaw, and Glennon were asked what they would say to someone who is contemplating registering to become an organ donor. 

Skeels said, “Do you want to be a hero? Do you want to save a life? Organ donation saves lives. A part of you could go on to save up to eight lives and benefit up to 75 others through tissue donations. You won’t need your organs in heaven, but you could leave a profound and lasting legacy here on earth.”

Bradshaw said, “Check the box. The greatest gift. Take care of yourself, make good decisions, and live a life of meaning. Perhaps someone you may never know can profit from the life you’ve lived.”

Glennon said, “It really comes down to our hashtag, which is ‘#Organ donors save lives.’ It’s the last great thing you can do in life. My life has been so enhanced by it, I can’t imagine not doing it. 

You can decide to change 83 lives in a matter of seconds by completing a 10-question registration with Donate Life.